Younger Patients With NETs: Distinct Symptoms & Quality of Life

In an interview with Targeted Oncology, Udhayvir S. Grewal, MD, assistant professor at the Winship Cancer Institute at Emory University, discusses an analysis derived from the Neuroendocrine Tumors – Patient-Reported Outcomes (NET-PRO) study, a significant collaborative effort involving a prospective cohort of patients with neuroendocrine tumors (NETs).

This extensive cohort was recruited from 14 distinct sites across the United States, establishing a broad and representative patient base for research into this relatively rare disease. The overarching goal of the NET-PRO study is to address key patient-identified research gaps by focusing on patient-reported outcomes (PROs), including the crucial areas of symptom burden, health-related quality of life (HRQOL), and patient preferences regarding their care and treatment.

This particular analysis centered on investigating the symptom burden and HRQOL specifically within the subset of patients diagnosed with early-onset NETs. The impetus for this focus stems from observations of a noticeable rise in the incidence of NETs among younger patients. Despite this apparent epidemiological trend, Grewal highlights a significant gap in the literature: there is very little existing data to determine whether the disease in these younger patients exhibits a different biological profile or a distinct impact on their overall quality of life compared to their older counterparts.

To address this knowledge gap, the core objective of the analysis was to conduct a focused comparison of symptom burden and health-related quality of life measures between younger patients (defined as those with early-onset NETs) and older patients with the same diagnosis. By leveraging the rich, longitudinal data collected within the NET-PRO database, the researchers aimed to provide valuable insights into potential distinctions across sociodemographic, symptom, and HRQOL profiles. These distinctions are critical not only for a deeper understanding of NET biology but also for tailoring care to meet the specific needs of younger patients, ensuring that therapeutic approaches and supportive care strategies are optimized based on age of onset and its associated consequences. The study, titled "Distinct Sociodemographic, Symptom, and HRQoL Profiles in Early-Onset Neuroendocrine Tumors: Insights from the NET-PRO Study," seeks to inform the clinical community about the unique challenges faced by this growing population of NET patients.

Read the full interview with Dr Grewal here.